Why I Wouldn’t Let My Son be Labeled Special Needs

My oldest son didn’t really talk until he was almost 3. He said a couple of words, like “ite” for “light” and the requisite “Mama” and “Dada,” but he didn’t string them together into sentences, which he should have been doing by then. He also didn’t point at things. He just went and got what he needed himself. (I thought it was a good thing, honestly.)

He had an abnormally large head (it was literally off the charts when the doctor tracked it), and he could stand for up to 20 minutes at a time, just watching a leaf blow in the wind. Based on all of the above–and from 5,000 miles away in California, mind you–my mother diagnosed him as autistic. I brushed it off. But, then, our pediatrician suggested we get him checked out, too.

It turned out that my son wasn’t autistic, but he did have a hearing loss due to recurrent ear infections (see Parenting Fails) that was presumably causing his speech delay. As a result, he was placed into New York State’s Early Intervention program, where therapists come to your home and work with your child, one on one. After straightening out such typically bureaucratic problems as being sent his paperwork in Russian simply because I mentioned that Russian was also spoken in the home, and a therapist who spent most of the session telling us about her opera career, we were finally matched with the appropriate person. Who did help my son learn to speak better. But, then, within months of him starting speech therapy, we were suddenly told he also needed physical therapy. Because he didn’t like to sit still. And occupational therapy. Because he didn’t hold a crayon correctly. Can you imagine? A 3-year-old boy who doesn’t like to sit still or hold a crayon correctly?

I declined the extra services. The State of New York was not pleased.

A year later, as with all good NYC parents, it was time to apply my son for kindergarten, which meant time to take a battery of IQ tests. He tested perfectly normal (albeit not “gifted” like your typical NYC tot), though his speech was still obviously stalled, now more in pronunciation than vocabulary. Nevertheless, we ended up enrolling him in the most academically rigorous school that would accept him, one that put special emphasis on public speaking and self-control.

I worried through most of kindergarten that he would be held back (he was also one of the youngest in his class, which didn’t help matters). But, he didn’t and, in fact, made it all the way up to 1st grade before we were, once again, advised to put him into speech therapy. Since he had aged out of Early Intervention, we needed to re-apply for state services, only to be informed that this critical problem my son had which they themselves had identified and informed us must be fixed immediately lest it worsen… would take about six months to a year to process through the system. We decided to get him the speech therapy right away and pay out of pocket, instead.

Once in speech therapy, my son was additionally diagnosed with an Auditory Processing Disorder. It basically means that when he hears sounds, his brain has a harder time making sense of them; the wiring is a bit crossed. Both the therapist and his pediatrician told me that Auditory Processing Disorder would qualify my son for all sorts of benefits, including extra time on standardized tests (my pediatrician also told me that Auditory Processing Disorder can sometimes present as very similar to ADHD, and would I like him diagnosed with that, too? ADHD, apparently, comes with even more perks!)

I said no.

For a variety of reasons.

1. If I’m being rushed into the Emergency Room, the last thing I want is for the paramedic to hand me a note explaining that he’s allowed extra time to quench my bleeding. (On the other hand, if I ran a law firm, I would make sure that every single one of my attorneys had an Extra Time Dispensation, and bill for 10 hours what would take most people three to complete… but I digress.)

And 2. If my son was going to spend the rest of his life living with an Auditory Processing Disorder, then it was imperative that he develop techniques for dealing with it. The sooner the better. Yes, it would be harder for him than most to attend a school where instruction was given orally and Speech and Debate weren’t electives but a regular part of the curriculum. But, if he wasn’t in a challenging environment now, how would he ever learn to function in the long run? Wouldn’t time just make everything worse?

So we didn’t allow him to be classified as Special Needs. Even as, every year, more and more kids in his class were. My son wanted to know why he couldn’t have extra time on tests, too. He knew he qualified for it.

I told him, “Because life doesn’t give extra time.”

And that’s the long and short of it. My job as a parent is to prepare all of my children to go out independently into the world and to survive there. Everyone has challenges. The only thing that matters is how they deal with it. Whether they deal with it.

I wanted my son to deal with it. I would support him. But, I wouldn’t coddle him. I wouldn’t make excuses for him–and I wouldn’t accept any excuses from him, either.

As you may imagine, my approach didn’t go over well in some circles. I was accused of making life deliberately hard for my son. I agreed that yes, in fact, I was. I was making it harder now, so that it might be easier later. The last thing I wanted was a child who didn’t know what to do with himself once all his support services were removed. (We’d learned from the second round of speech therapy not to expect help to always be there.)

I was accused of it being all about my own ego, and of being unable to accept that my child wasn’t perfect. That I was in denial about his issues. I was accused of setting him up to fail. Okay, guilty. I’ve written before about how I do want my kids to fail. If only so they learn it’s not the end of the world, and continue to take chances and do interesting things.

So, here’s where we stand now: My son is 13 years old, and in the 8th grade. This past year, he applied to a variety of NYC high schools.

The boy whose inability to grip a pencil was considered worthy of occupational therapy that I turned down was accepted to LaGuardia’s (that’s the “Fame” school) fine arts program.

The boy whose inability to sit was considered worthy of physical therapy that I turned down was accepted into an early college program composed of seminars held around a table… while sitting.

And the boy for whom an Auditory Processing Disorder should have obviously meant a less rigorous academic programs and extra time on tests, which I also turned down, was accepted to an exam-based high-school where 30,000 students compete for less than 1000 seats (a ratio “Time Magazine” called tougher to get into than Harvard).

Was the testing, interview, and audition process difficult for him? Absolutely yes. Did he have to put in more effort that the average kid? Presumably. Were there moments when he wanted to throw in the towel? Yes. Were there moments when I wanted to throw in the towel? Yes. (Were there moments when my husband wanted to throw in the towel? No. He keeps needling me about how he always had more faith in our son than I did it. Smugness is not that man’s most attractive quality.)

Am I sorry I forced my son to go through all that? No. What he learned went far beyond algebra and scrambled paragraphs. He learned that he is someone who can set a goal, and then work hard to achieve it. That’s the way I want him to view himself for the rest of his life. That’s the only label I want pinned on him.

Alina Adams is the mother of three school-age kids, who in her copious free time is turning her backlist of traditionally published romance and mystery books into enhanced e-books, as well as collaborating with other authors to do the same. More at www.AlinaAdams.com.